Adjusting to life with dementia is an incredibly hard transition, both for the one diagnosed and their loved ones. As the disease progresses, relationships can be strained, and stress may rise for everyone involved, making it difficult to decide what the best course of action is.
Being Patient spoke with Teepa Snow, an occupational therapist and dementia care educator, about ways to improve quality of life as a caregiver for someone with dementia.
Dealing with Changing Relationships
Being Patient: How do you deal with the relationship between someone with dementia and their loved ones changing? How do we overcome those changes in interpersonal relationships?
Teepa Snow: One of the hardest things to recognize is that we can’t have what we used to have. We are going to have to be willing to let go to some extent. That doesn’t mean give up on it, but we can’t have it be the thing that guides. Trying to duplicate what we had before is going to result in a feeling of, “This isn’t right. This isn’t enough.” So if we’ve been a couple, we may need to spend time apart; not alone, but interacting with someone else, someone who is the right fit for their personality.
Some people living with dementia opt for service animals, and service dogs are very effective because that dog becomes the partner, and the dog is trained to stay with the person. But also the dog will have a chip, so if the person gets lost or turned around, the dog can be tracked. So people who don’t want to be around other people all the time do better when they have a support animal.
Being Patient: How do we deal with the disappearing friend syndrome? It’s almost as though some people feel Alzheimer’s is contagious.
Teepa Snow: That, unfortunately, is a very common phenomenon. And it’s because we don’t train people to be friendly. People want the friendships they’ve had; they don’t want to sustain friendships that change. And people get nervous and anxious, and they say the perfectly awful thing, “So, how is she doing?” in front of her!
But at the same time, if I don’t know how to have a conversation with you, then coming over starts to feel awkward and uncomfortable, and if I come and I bring my big plan, like we’re going to look through the photo album of when we were in college, and I bring it out and they go “I don’t want to look at that stupid thing,” because where they are in their dementia means they don’t want to do that right then, then the friend isn’t prepared for that.
So it’s important to be prepared and have options, and say “I brought my photo album, so would you rather look at that, or go out for a walk?” So we have to recalibrate our friendships to the abilities of the person. And what I would say is that if I have disappearing friends, I need to look around for new friendships.
Motivating and Engaging
Being Patient: In your experience, what works best to really empower the person with dementia?
Teepa Snow: So one of the tricky parts is being aware that some dementias are more lethargy-producing or apathy-producing than others, which makes it difficult to find pleasure. So if apathy is an issue, I really recommend that family members recognize a need for a third party, because you’ll find that it feels like you’re trying to move lead weight, and it starts to feel like it’s deliberate. “You won’t even try; you’re not even getting up!” It starts to feel like a battlefield.
Those individuals are going to need a different kind of support, someone who’s skilled at getting things back on track and yet who can recognize that they might never come back fully. And on the other hand for other people who don’t have apathy but are feeling anxious and unsure, one of the things to do is start with baby bites. Just ask them, alright, would you rather help me in the yard or go out and do something? So what I want to produce as a support person is an either/or option with equal benefit.
Being Patient: There is a tendency to start to talk to the person with dementia like a child. How do we avoid that?
Teepa Snow: Simplify, don’t babify. We need to really work with their expertise, but we have to know enough about what they enjoy and what they used to do to be able to ask questions that more than likely they’ll be able to answer. Most people like to feel they can help in some way, and so it’s important to pick things that give them a sense of value and purpose, that play to their strengths, and then really, truly, respectfully wanting their opinion.
If I know that in the past she liked flower arranging, I might bring simple flowers and say, “There are three vases here, which vase should I work with?” And I just now created activities, and whatever she does I can look at it and go, “Wow. Let’s take a picture of that one.”
I’m carrying some of the heavy lifting for the interaction, but the person starts to feel valued. It’s not artificial, I do value what they have to offer, I do value our interaction. I value how we’re building time together. But if you don’t really want to do it, don’t, because you’ll sound fake.
Being Patient: How do we deal with loved ones with dementia who suddenly turn around and say, “I hate you”? How do we equip that steely armor to say, “It’s just the disease talking, it’s not the person”?
Teepa Snow: So what I’m going to say is that it’s partly the disease and partly what we’ve been doing because nobody prepared us for this disease. It’s sometimes as simple as my husband, who has dementia, saying, “Well I don’t need socks,” and I without thinking say, “You do too need socks! You have blisters on your heels, you have diabetes, put on a pair of socks!”
And it’s really my fear that he’s going to develop problems with his feet. I can see his frustration with me, but I have a hard time often as the care person recognizing what in my voice didn’t sound like the wife he married, what in my voice sounds like my mother on a bad day, what in that voice and that behavior sounds like I’m trying to boss him around rather than that I’m trying to help.
All I’m trying to do is help, but in that moment my own stress level is so high; and if were to watch a video of myself I wouldn’t believe that I sounded like that. Both people need time apart, so that they can enjoy time together. Sometimes the person doing the caring takes on too many roles for too many hours, and pretty soon you’re not even thinking about what you’re doing, you’re just trying to do what you need to do.
Being able to pull back and say, “I need time away, he needs time away. What he’s really saying is that he needs time away from you,” it’s intense, and in that moment it feels like forever and always, but what might really be going on is that we’re spending too much time in conflict trying to live, and we need to live better by not trying to do so much together for so many hours.
Being Patient: Aren’t there time when someone with dementia needs a parental figure. How do you decide who’s fit for that role?
Teepa Snow: They do need an authority figure, so I would really take a hard look around at who’s an authority for them already. Can there be somebody that’s not their primary partner so that one person stands beside them and one person dishes the dirt. One person says, “Driving needs to stop.” And if the person with dementia questions it, then the partner can be the question seeker and the advocate, but what they’re really doing is sharing the grief of the news. So that way there is an authority figure who lays down the law, but the partner stays there beside them on their side.